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24 HR results confused??????...... (LPR)

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Posted 5/30/2019 4:24 PM (GMT 0)
So recently I went to see a surgeon about possibly getting a fundo. wrap and we did all the preliminary testing before being considered...

My 24 HR came back within normal ranges which is weird because I know I have LPR.

My symptoms are so bad to the point my mouth has become slowly numb in some parts from all the damage within last 6 years.

My results said I had DeMeester score of 7.2, which is less than 14.7 (this is considered normal range)

Positions:

Upright-
13 episodes of acid reflux
53 episodes of weakly acid reflux ( I consider this a lot) though he considered it normal???

Supine (sleep position)-
5 acid reflux episodes
3 weakly acid reflux episodes

Pressure points and swallowing was all within normal ranges…

So I am confused do I have LPR or not? Because I have the symptoms and the damage is there every day I wake up. Has anyone gotten the same results as me? 53 episodes is a lot in my opinion… I am not on the PPI btw.
Posted 5/30/2019 6:26 PM (GMT 0)
Midnightblues:

Did your doctor diagnose you with LPR in the past? What are his suggestions now that your test results have been read? I'm not a medical professional, but your test results do seem normal, but I'm sure that your symptoms are very real. And, the scores don't always tell the complete story. You might want to consider getting a second opinion.

Sharon
Posted 5/30/2019 11:34 PM (GMT 0)
Hi Sharon,

Thanks for replying to me. 2012----So in the past I had a mild gastritis that lead to my esophagus getting destroyed but was healed after being on PPI 1xDAY for 12 weeks.

After getting off them is when I started feeling the LPR symptoms. I was referred to an ENT back in 2013 when I first got diagnosed, he took scope down there and saw I had redness, post nasal drip, pool of mucus, etc. Put me back on PPIs, only stayed on them for like a month because symptoms kept occuring and didn't target my LPR symptoms.

Went to a specialist in Pennsylvania (back when I had a iron insurance) diagnosed me with the same thing, plus a deviated septum, and muscle tension dysphonia.

Got frustrated running around to doctors so I ignored my illness for years to the point I done a lot of damage to my tissues. That is why I am getting back on track on targeting this again. The only problem is now I have so much numbness I cannot tell if I am even refluxing or not anymore even though I have seen the mucosal changes over the past years get worse, chronic sore throat, and chronic irritation throughout the mouth plus numbness and post nasal drip still occurring but my nerves are so damaged I can not even feel it taking plus unless I directly look at it.

At this point, I am taking no more tests because I am afraid of further damage, plus I haven't really been eating because food is scaring me now. (TMI sorry)

Waiting to do the Peptest (saliva test), which I just ordered. It's the test that really lets LPR people know if they have LPR or not. Then I follow up with my surgeon to discuss the results and about moving forward.

Once I take this test and depending on the results, the only thing I can think of is I might have Laryngeal Neuropathy plus reflux or Post Viral Vagal Neuropathy. Where some patients have reflux plus an irritated nerve causing the symptoms to collide all at once and I just need to find an ENT or doc who will prescribe me the meds if that is the case. My location of living and insurance is very limited.... a lot of people are not up to date on the complex ways of LPR.

The reason I made this post is because I was asking what were others # of episodes and what's considered a normal # of episodes for regular people who do not have GERD or LPR...

Best,
Dee
Posted 5/31/2019 11:45 AM (GMT 0)
Hi Dee:

You really seem to be on top of everything! I have to warn you about doing too much research on the internet, there is a lot of misinformation out there. I don't have any experience with LPR, sorry. I don't have my test scores, I had NF surgery over five years ago. Hopefully, someone with more information will be along to offer their experiences. Be patient, the Boards have been really slow lately.

Sharon
Posted 5/31/2019 4:52 PM (GMT 0)
Sharon--

I appreciate the encouragement. Our diseases are a long road and hard to understand. It can be very frustrating sometimes to be honest. But I am trying to be more positive. Thank you for just checking on this board.

Best,
Dee
Posted 6/1/2019 11:51 PM (GMT 0)
Had Toupet 3 yrs ago for huge hiatal hernia (still not closed). After TF, LPR got much worse. Have a good GI dr. who dx’d me bef TF as having NERD. Today, for first time, on this board, I found NERD equated with LPR.The ENTs I saw only thought I was hypersalivating so gave me botox shots. Took 6 months to wear off and couldn’t swallow anything except liquids for 3 of them. Wanted to have 24 hr PHtest. No one will give it to me. The ENT literally chased me out of the office. So I’ll stick with the nice GI guy. He has me on ranitidine 300 mg b.i.d. I (fortunately) am unable to take PPIs. Have just started Gaviscon Advance from UK. Have been taking it around 9 pm. Seems to help. When the LPR hit myleft eye (tho the ophthalmalogist insists it is allergic conjunctivitis), GI dr and Primary Care Provider both suggested hi PH water which I’ve started drinking too. So now have LPR affecting, esoph., throat, voicebox, PND, all on left side, then congested ear on right, and tearing and itching in left eye. Anyone else have similar symptoms? Also, sometime globus and nausea.
Posted 6/2/2019 1:17 AM (GMT 0)
Also, have chronic GI cough, asthma, and the absolute worst, all the mucus and goo coming up my esoph. Go thru at least a box of Kleenex a day.
Anyone else have these symptoms? A means of alleviating them?
Posted 6/2/2019 10:04 PM (GMT 0)
Pleyel---

Toupet is not really good for LPR, only nissen full wrap is the golden standard.

Hunt down anybody to give you the 24HR, check for one with LPR cather too, to rule out LPR. Look into getting the Peptest done by RD biomeds, google it and you will find it. It rules out LPR or not... they send you tubes, you spit into the tubes, and send it back, and you have to complete the tests between 2 days, read all the directions on their website. Cost is 180... a little much, but worth it. Email them all your questions before ordering they are pretty responsive with answering all your questions before buying anything.

Your symptoms sounds so similar to mine. Started with minor hypersalivation, was prescribed ppi and that's when everything broke loose. Hence, the LPR I have now.

I have post nasal drip on my right side, so much damage in my mouth and back my throat...used to be able to feel my symptoms, now I can't because everything is so numb from the constant irritation. I have ear infections constantly in my RIGHT EAR, sneezing, tongue, and dental issues. Look up LPR symptoms, the list is so long a lot people do not know too much about it.

Wish I can help you with more, but all I can offer is ruling out the causes.. doing those test will help diagnose as official.

Causes include:
Sibo
Neuropathy in the vagal nerve
Gastroparesis
Malfunctioning LES
certain foods besides the one they tell you to rule out.

Good luck.
Dee
Posted 6/3/2019 1:46 AM (GMT 0)
Thx, Midnight Blues. I’ll check out Bio Med. Had to have Toupet bec I had a huge hiatal hernia w/ stomach going into chest, and horrible esophogeal spasms. The Toupet partially closed the hiatal hernia, but not entrely bec that wd have shortened my esoph too much, or so the surgeon said. It also stopped the esoph spasms.Pre-Toupet, the GI dr had me on PPIs. That helped the spasms but I had horrible GI probs fromall of the PPIs. GI dr said I am one of 3-4% of people who can’t take PPIs. Post Toupet, I tried every H2 blocker til I found I cd tolerate only ranitidine. Was on that 150 mg 2x/day. When that stopped working 300 mg ranitidine b.i.d. Still leaves me with horrible mucosal backflow, chronic cough, and everything else I listed above. Drs. don’t know what to do. At least now they admit LPR is a real medical condition. When I started this journey, they did not.
Posted 6/3/2019 1:54 AM (GMT 0)
Sorry, I meant RD biomed. Yes, your symptoms sound identical. The dental work alone these last 3 yrs has cost 1000’s and that’s with some dental insurance. PCP just tells me to gargle prophalactically with salt water, take tylenol, and for some reason kefir helps me. Don’t know why.
Posted 6/3/2019 2:02 AM (GMT 0)
Dee,
(That’s my middle name). I have had gastroparesis and tried domperidone (from Israel) but won’t try generic for Reglan bec of potential side effects. Also took erythromycin for it. And, yes, manometry shows weak LES, that doesn’t help. I hope the surgeon didn’t hit the vagal nerve in doing the laporoscopic Toupet. Don’t know. How do I find out? Also, haven’t googled Sibo yet so don’t know what it is.
Best,
Pleyel
Posted 6/3/2019 3:04 AM (GMT 0)
Dee,
Sorry to write yet again. But why do all the testing when there are NO MEDs that address the probs? I have access to drs and meds. The ranitidine helps some. The newly found Gaviscon Advance from the UK seems to help too. ALL my drs encouraged me to take it. Hyoscyamine SL .125 mg stops the PND when it becomes chronic (but if I take it, it keeps me awake at nights).Even one tablet SL seems to stop PND up to 4 hrs. This week have been drinking hi PH water so don’t yet know whether it does anything.
What other things (food or meds) seem to help you? I too have bec afraid of food and am living practically on kefir and unsweetened applesauce. I was able to get that down after the fundiplocation, and it still seems to go down smoothly.
Pleyel
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